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Vloga medicinske sestre pri obravnavi otrok in mladostnikov z nevrofibromatozo tipa 1 : diplomsko delo
ID Ribič, Carolina (Avtor), ID Thaler, Darja (Mentor) Več o mentorju... Povezava se odpre v novem oknu, ID Vettorazzi, Renata (Recenzent)

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Izvleček
Uvod: Nevrofibromatoza tipa 1 je dedna genetska motnja, ki prizadene živčni sistem in povzroča rast benignih tumorjev na perifernem in centralnem živčnem sistemu. V nekaterih primerih lahko ti tumorji postanejo maligni. Bolezen pogosto spremljajo tudi skeletne nepravilnosti, učne težave, motnje pozornosti ter vedenjski in socialni izzivi, ki pomembno vplivajo na kakovost življenja otrok in njihovih družin. Medicinske sestre imajo pomembno vlogo pri zdravstveni in psihosocialni obravnavi teh bolnikov. Namen: Namen diplomskega dela je raziskati vlogo medicinske sestre pri obravnavi otrok in mladostnikov z nevrofibromatozo tipa 1 ter ugotoviti, s katerimi težavami se soočajo bolniki in njihovi starši. Metode dela: Uporabljena je bila deskriptivna metoda pregleda strokovne in znanstvene literature. Iskanje je potekalo od decembra 2023 do maja 2024. Literaturo smo iskali v podatkovnih bazah Google Scholar, CINAHL in Medline, pri čemer smo vključili 41 ustreznih znanstvenih virov, objavljenih v zadnjih desetih letih. Rezultati: Ugotovljeno je bilo, da se otroci in mladostniki z nevrofibromatozo tipa 1 soočajo s številnimi fizičnimi, psihološkimi in socialnimi izzivi, kot so bolečina, kožne spremembe, stigmatizacija, nizka samopodoba in socialna izključenost. Starši teh otrok pogosto doživljajo čustveno izčrpanost, stres in negotovost. Medicinske sestre pomembno prispevajo pri spremljanju simptomov, izobraževanju in svetovanju družinam ter zagotavljanju psihosocialne podpore. Razprava in zaključek: Medicinske sestre imajo ključno vlogo pri celostni obravnavi otrok in mladostnikov z nevrofibromatozo tipa 1, saj poleg telesne oskrbe nudijo tudi čustveno podporo ter sodelujejo z različnimi strokovnjaki znotraj multidisciplinarnega tima. Večja vključenost medicinskih sester in širše ozaveščanje javnosti o nevrofibromatozi tipa 1 bi lahko dodatno pripomogla k izboljšanju kakovosti življenja teh bolnikov in njihovih družin.

Jezik:Slovenski jezik
Ključne besede:diplomska dela, zdravstvena nega, nevrofibromatoza tipa 1, otroštvo, mladostništvo, kakovost življenja
Vrsta gradiva:Diplomsko delo/naloga
Tipologija:2.11 - Diplomsko delo
Organizacija:ZF - Zdravstvena fakulteta
Kraj izida:Ljubljana
Založnik:[C. Ribič]
Leto izida:2025
Št. strani:33 str.
PID:20.500.12556/RUL-172953 Povezava se odpre v novem oknu
UDK:616-083
COBISS.SI-ID:248754691 Povezava se odpre v novem oknu
Datum objave v RUL:12.09.2025
Število ogledov:441
Število prenosov:78
Metapodatki:XML DC-XML DC-RDF
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Sekundarni jezik

Jezik:Angleški jezik
Naslov:The role of the nurse in the treatment of children and adolescents with neurofibromatosis type 1 : diploma work
Izvleček:
Introduction: Neurofibromatosis type 1 is a hereditary genetic disored that affects the nervous system and leads to the growth of benign tumors on the peripheral and central nervous system. In some cases, these tumors may become malignant. The disease is often accompanied by skeletal abnormalities, learning difficulties, attention disorders and behavioral and social challenges, all of wich significantly affect the quality of life of children and their families. Nurses play an important role in both the medical and psychosocial social care of these patients. Purpose: The purpose of this thesis is to investigate the role of nurses in the care of children and adolescents with neurofibromatosis type 1 and to identify the challenges faced by these patients and their parents. Methods: A descriptive method was used on a review of professional and scientific literature. The literature search was conducted between December 2023 and May 2024. Sources were identified in databases such as Google Scholar, CINAHL and Medline, resulting in 41 relevant scientific articles published in the last 10 years. Results: It was found that children and adolescents with neurofibromatosis type 1 face numerous physical, psychological and social challenges, such as pain, skin changes, stigmatization, low self-esteem and social exclusion. Parents of these children often experience emotional exhaustion, stress and uncertainty. Nurses play a key role in monitoring syptoms, educating and advising families and providing support. Discussion and conclusion: Nurses play a crucial role in the holistic care of children and adolescents with neurofibromatosis type 1. In additional to providing physical care, they offer emotional support and collaborate with various professionals as part of a multidisciplinary team. Greater involvement of nurses and broader public awareness of neurofibromatosis type 1 could contribute to improving the quality of life for these patients and their families.

Ključne besede:diploma theses, nursing care, neurofibromatosis type 1, childhood, adolescence, quality of life

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